Surly Sue (Karen T)

It's just a matter of time before they name a syndrome after me.
68
Vestibular Neuritis

Surly Sue retired in 2019 at 67 to join the world of balance rehab after a research hospital told her she needed an autopsy to really know what was wrong with her. We think Sue’s 2017 heart bypass messed up the gyroscopes in her 3rd eye. Since then, Sue has been clawing her way through months of vestibular rehab therapy to exorcise that monkey mind. A determined and heroic Surly Sue is pictured here with her home therapist, Uncle Brenda.

It all began when Surly Sue and I met friends at a nearby Tallahassee restaurant in August 2017. Sue was not interested in dinner that evening. We had visited Urgent Care a week ago and her primary doctor that day only to be given a big bottle of GERD medicine. When we returned home after dinner, Surly Sue had a heart attack as we walked up the hill in our front yard. While Surly Sue protested my 911 call, she sat down at the dining room table and complained her throat was on fire.

Sue was quickly whisked off to the ER and 3 days later into heart surgery- a successful double bypass around the widow-maker and 2 other blockages. Her heart and pipes were ok. Surly Sue rose from the dead in less than 12 weeks and eagerly went back to her tedious legal job. Within 6 months, Sue unknowingly headed into decompensation - a speech slur, handwriting and balance issues. Surly Sue describes it as “The Crash”.

The cardiologist kept telling Surly Sue to drink water for the dizziness until she ended up in the emergency room over-hydrated. He did mumble “pump-head syndrome” was possible from the heart-lung machine but most cardio professionals run at any mention of that. Several neurologists offered Parkinson, Ataxia or ALS condolences and ignored the bypass event altogether. And let’s not go into the torture list of inconclusive scans.

MRI, DAT, EMG and favorite ENT tests left her with 2 weeks of intense tinnitus and a bad attitude noted on her report. However, Surly Sue was fortunate to find a dedicated balance therapist AND a realistic anxiety therapist to help her keep what she has left. Due to drug sensitivity, Surly Sue is unable to take meds for her anxiety since most of them list “dizziness” as their first side effect. Why can’t there be a pill for dizziness? And yes, Sue is working on her mindfulness, which she calls the “Foreverness of Now”.

Fast-forward to 2020, Surly Sue is bravely wrestling with the same stubborn symptoms of severe imbalance, boosted by neuritis flare-ups, inflammation and nerve damage thanks to being cut in half on the operating table. Her “Brain Bullies” include dizzy, sway, spin, swirl, swim, heavy head and light head fog accompanied by coordination issues with speech, hands and legs - full of pinched nerves, irritated proprioceptors, and a bit of head turning PPPD. Every day feels worse.

Surly Sue walks 1.5 miles daily – holding onto my arm while our dogs scamper in the hills of a deserted golf course. Thoroughly over-stimulated, Sue retreats to her “bunker” (the bed) while I cook a big breakfast for all of her hard work. Then, onto the treadmill of Time and Repetition with daily rehab exercises, therapy and support groups like VEDA.

Thank you, VEDA for your outreach, your forums, your specialist contacts and your courageous members, who are on similar journeys through this maze of invisible vestibular madness and dizziness. Any help, advice or recommendations are welcome - email [email protected]

Written by her wife of 30 years, Lissa Flock
Edited by Surly Sue 5/3/2020

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